Clinic of Neurology, National Cardiology Hospital, Sofia, Bulgaria.
Department of Social Medicine and Public Health, Faculty of Public Health, Medical University of Plovdiv, Plovdiv, Bulgaria.
Front Public Health. 2022 Mar 3;10:822909. doi: 10.3389/fpubh.2022.822909. eCollection 2022.
Myasthenia gravis (MG) is a chronic autoimmune disorder, which is characterized by fatigable muscle weakness with frequent ocular signs and/or generalized muscle fatigue, and occasionally associated with thymoma. MG patients and their families face a significant socio-economic burden. This population is often experiencing unemployment, unwilling job transfers and decreased income.
This study aimed to estimate the annual costs from a societal perspective in a triple dimension of direct health care costs, direct non-health care costs (formal and informal care) and labor productivity losses in MG patients from Bulgaria, as well as to identify the main clinical and demographical cost drivers.
A bottom-up, cross-sectional, cost-of-illness analysis of 54 adult MG patients was carried out in 2020. To collect data on demographic characteristics, health resource utilization, informal care and productivity losses, questionnaires were administered to and completed by patients.
Median annual costs of MG in Bulgaria were 4,047 EUR per patient. Direct costs slightly outweighed indirect costs, with drugs cost item having the biggest monetary impact. Despite the zero-inflated median, hospitalizations also influenced the direct costs by an estimated amount of 1,512 EUR in the 3rd quartile. Social services and professional caregiver costs were found to be almost missing, with the vast majority of patients reporting reliance on informal caregivers. Severe generalized disease, disease crises, and recurrent infections were confirmed as statistically significant cost driving factors. There were no severe generalized MG patients in the bottom quartile of the total costs distribution. It should be noted that in both cases of crises or infections, the overall increase in the total costs was mainly due to higher indirect costs observed. Reliance on family members as informal caregivers is routine among Bulgarian MG patients. This phenomenon is likely due to the lack of access to appropriate social services. Moreover, it is directly related with higher disease burden and significant inequalities. There is a need for further research on MG in Bulgaria in order to design targeted health policies that meet the needs and expectations of these patients.
重症肌无力(MG)是一种慢性自身免疫性疾病,其特征是肌肉疲劳无力,常伴有眼部症状和/或全身肌肉疲劳,偶尔伴有胸腺瘤。MG 患者及其家属面临着巨大的社会经济负担。该人群经常面临失业、不愿调任工作和收入减少的问题。
本研究旨在从社会角度评估保加利亚 MG 患者在直接医疗成本、直接非医疗成本(正规和非正规护理)和劳动力生产力损失三个维度的年度成本,并确定主要的临床和人口统计学成本驱动因素。
2020 年对 54 名成年 MG 患者进行了自下而上、横断面、疾病成本分析。为了收集人口统计学特征、卫生资源利用、非正规护理和生产力损失的数据,向患者发放并由患者填写问卷。
保加利亚 MG 患者的年平均费用为 4047 欧元。直接成本略高于间接成本,其中药物成本项目的货币影响最大。尽管中位数为零膨胀,但在第 3 四分位数中,住院治疗也估计对直接成本产生了 1512 欧元的影响。发现社会服务和专业护理人员成本几乎为零,绝大多数患者报告依赖非正式护理人员。严重的全身疾病、疾病危象和反复感染被证实是统计学上显著的成本驱动因素。在总成本分布的第 4 个四分位数中,没有严重的全身 MG 患者。应当指出,在危象或感染的情况下,总成本的总体增加主要是由于观察到的间接成本增加。保加利亚 MG 患者依赖家庭成员作为非正式护理人员是常见的。这种现象可能是由于缺乏适当的社会服务。此外,这与更高的疾病负担和显著的不平等直接相关。需要对保加利亚的 MG 进行进一步的研究,以便制定针对这些患者的有针对性的卫生政策,满足他们的需求和期望。